Advocating for my disabled brother, Robert, who has intractable epilepsy, unwavering faith and a delightful ability to declare everything excellent. Robert shows me everyday the power of the Magic of Excellent.

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Monday, October 24, 2011

Book of the Month

Denise Brown, founder of Caregiving.com, will talk with me about the book tomorrow (Tuesday, October 25) at 12:00 p.m. PDT. You can listen here.

Forever a Caregiver is a book that took me ten years to write but was actually a lifetime in the making. (Still – 10 years? Sheesh!). Denise was one of the many people who encouraged me to publish this book and who ignored my disclaimers along the way (I can be quite persistent with my disclaimers). I am very grateful to Denise, my family and friends for helping me see this book through to completion and publication instead of indulging the coward in me and letting me safely keep it to myself. My hope is that others will see their own family experiences in this book and find acceptance of their family roles and experiences.

Now that I actually know what caregiving is, I realize I was born into this caregiving role. Everyone has family roles and mine happens to be the one where I take care of people. Maybe it’s the control freak in me but I enthusiastically accept this role although, I admit, it was not always something I wanted to do. As a teenager, keeping a watchful eye on Mom so she didn’t sink further into depression (and attempt suicide again) was not something I would have volunteered to do or wish on anyone else for that matter. Yet it was one of many experiences that I accepted, managed to get through and which I actually appreciate for making me the person I am today.

“Appreciate” may seem an odd word choice but I wouldn’t want to be anyone else and those experiences helped shape who I am. For me, appreciating these family experiences (and family itself) is the perfect word.

That complete acceptance of my experiences made me a better caregiver to Mom when she was terminally ill twelve years ago and helps me be the best caregiver I can be to Robert today. Don’t misunderstand – caregiving is not easy and it certainly isn’t always (or even mostly) roses and butterflies and lollipops but taking care of family is what fulfills me and I wouldn’t have it any other way. Call me crazy!

Please recommend this book to anyone who finds themselves in a caregiving role or who has struggled with accepting some of the mess that comes with being a part of a family. I'd love it if you listened tomorrow too!

Trish, So glad I stumbled on this post--don't know if I'll be able to listen tomorrow, but I'll be thinking of you. Even more important, I need to order your book! I got distracted earlier when you first announced it, but now I'm putting it onto the "immediate read" list. As I've shared, I did some caregiving for an elderly aunt, and although she didn't live with us, I had experiences with moving her across the country, finding a suitable place for her to live (which took a few attempts), interacting with care providers, and visiting her regularly as her only family. It gives me such a different understanding of people who take on even larger caregiving roles, as you have done.

Thank you, Judy! I hope you enjoy the book when you're able to read it (the interview was actually on Tuesday but you can still listen to it if you'd like). I plan to write more books on the caregiving experience and have found many people have related in some way to these first experiences in my book (my caregiver training wheels as I call them). :-) I commend for you taking care of your aunt. It's not easy to take care of someone long distance and then dealing with care facilities. I actually think it may be more difficult because instead of giving care and love to your family member, you are using a lot of energy fighting for good care. You did a great thing for your Aunt, Judy.

Books for the Caregiver

365 Caregiving Tips: Practical Tips From Everyday Caregivers

Forever a Caregiver, by Trish Hughes Kreis

Tell Your Story

Do you want to tell your caregiving or epilepsy story? I would love to talk to you! Email me at robertssister@att.net and I will publish an interview with you. Telling our own story helps others while also helping ourselves. I look forward to hearing from you! Trish

About Me

Trish Hughes Kreis works as a full-time Legal Administrator and is a freelance writer, blogger and videographer who advocates on behalf of her disabled youngest brother, Robert. Robert lives with intractable epilepsy, has an unwavering faith and a delightful way of declaring everything excellent. Robert has lived with Trish and her husband, Richard, for four years and they do their best to keep him happy, healthy and, well, excellent.

Trish is an advocate for more research on the long-term effects of uncontrolled epilepsy as well as an advocate for expanding the definition of family to include sibling care under the California Family Rights Act and Family and Medical Leave Act.

Trish also does her best to navigate the maze of social services and government programs available to help Robert and keeps him entertained with an endless supply of word search puzzles and game shows.

Trish contributes articles and videos to the Assisted Living Directory and has written for Caring.com, The Intentional Caregiver, Today's Caregiver and the EmblemHealth “What Care Feels Like” microsite. Trish is a co-author and publisher of the "365 Caregiving Tips" book series written with four other experienced caregivers with the hope it helps other caregivers navigate the world of caregiving. Daily tips are posted on the 365CaregivingTips.com website.